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editor
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Joined: 31 Oct 2003
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 Posted: Sun Dec 07, 2003 5:57 pm Post subject: Home Care |
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Home Care
Introduction
We have been wrestling the last year or so with the subject of home care and how best to present the issues in a discussion forum so as to encourage narrative while eliminating repetitive theorizing. So far, there seem to us to be two main problems with home care: first, finding a way to access the service and, second, developing a negotiating strategy to make the service truly useful in a unique human dynamic that places the disabled client at a potentially dangerous disadvantage.
Home care and the Romanow Report:
We begin with the Romanow Commission's Final Report: Building on Values: The Future of Health Care in Canada, specifically Chapter 8 - Home Care: The Next Essential Service at p. 30 of the Executive Summary, where recommendations are summarized as follows:
| Quote: | | ...While it is not possible to include all home care services under the Canada Health Act, immediate steps should be taken to bring services in three priority areas under the umbrella of the Canada Health Act - home mental health case management and intervention services, post-acute home care and palliative home care. |
Now go to Unfinished Business: The Case for Chronic Home Care Services, A Policy Paper, which discusses the failure of the Romanow report to address the key role of home care services for persons with ongoing care needs. Scroll down to Conclusions at Table 1, where it explains very clearly the cost-benefit analysis of home care service:
| Quote: | | For example, average annual costs to government for people with moderate care needs (Intermediate care 1 or IC1) in the mid-to-late 1990s, in British Columbia, was $9,624 for persons on home care and $25,742 for people in institutions. For people at the highest, or chronic, level of care (Extended care) the corresponding costs were $34,859 and $44,233. |
Is a lack of hom support killing the disabled? Read the story, Cutbacks and Decisions; Life and Death at our News forum for information about the death of wheelchair athlete Dwayne Gough, 32, in Victoria, B.C. several years ago. Scroll toward the bottom here.
Further Reading:
See July/August, 2004 issue of Transition magazine devoted to home care, available free online on our homepage. See also the materials of the Health Law and Policy Group, particularly Defining the Medicare Basket, listed at the University of Toronto website.
Home care in the U.S:
In support of a Canada-wide push by disability advocates for increased home care, the Council of Canadians with Disabilities (CCD) based in Winnipeg, Man. included on its website last January a submission before a U.S. hearing by activist Justin Dart, a passionate supporter of a new bill in that country, which would allow many institutionalized patients to live at home.
Here is an excerpt of that submission from Justin Dart on Home Supports:
| Quote: | Right now, as we sit here, over two million Americans are institutionalized. And many are there because we have not yet had the will to give them the control and choice, the basic human right, to live where they want to live. We spend over $51 billion on Medicaid long-term care. Eighty per cent of that, $41 billion, pays for institutions, mostly nursing homes and intermediate care facilities for the mentally retarded, ICF-MR. The other 20 per cent covers all the community-based services available under Medicaid.
We tried to address the problem of long-term care when we created an entitlement to nursing homes and before that when we created the various state institutions for people with disabilities. But we did not get it quite right back then. We thought we would be offering a basic safety net. Instead we have created a trap in which millions of Americans have become entangled. People have had to give up their homes, their marriages, in some cases, their children, their parents and many of the most important parts of their lives, because they need assistance they cannot get at home.
The reality is that I am personally able to afford some of the supports I need. Most Americans can't afford these services and don't have the option of living a better life at home. They don't have a real choice. HR 2020, MiCASSA - which means "my home" in Spanish - would give them that real choice. |
Further Reading:
For a full report on the Medicaid Community Attendant Services and Supports Act (MiCASSA), including its progress through the legislature and political lobby information, click here. See also Freedom Wheels, our review of the recent PBS documentary featuring an interview with a Tennessee advocate, who claims that nursing homes have a stranglehold on funding that might otherwise be earmarked for generally preferred and more cost-effective independent living programs. We have asked the filmmakers to put us in touch with that advocate in an effort to continue the discussion. Please check our Worldwide Disabilities forum for updates.
Who needs home care?
Start with the italicized paragraph above the Dart submission, where the CCD states that there are currently 3.601 million Canadians with disabilities or 12.4 per cent of the population. We've asked for confirmation of those figures as well as the number of those receiving or who might benefit from home care and any breakdowns between provinces. See also the B.C. Coalition for People With Disabilities' current proposal for a national home care scheme, the parameters of which are neatly set out in the current issue of its in-house magazine, Transition, available on our homepage. For international statistics, search Disability Rights Promotion International (DRPI) at our Worldwide Disabilities forum.
Our e-mail to CCD regarding stats:
| Quote: | From: <editor>
To: "CCD" <ccd>
Cc: <editor>
Sent: Thursday, January 29, 2004 9:59 AM
Subject: Justin Dart and Canadian Disability Stats
Hello CCD,
I'm working on the home care issue at our Protocols forum and I've just linked to your submission by Justin Dart on the MiCASSA bill. I'm looking at your stats at the top of that page:
3,601, 000 Canadians with disabilities, 12.4% of the population?
Where did you get the numbers and do you have any breakdowns? Any estimates of the number of Canadians who might require ongoing home care services to remain at home?
Thanks and try to stay warm. It's not the nicest time of year on the Prairies. Winnipeg nearly killed me 20 years ago. Terrific food and theatre, though.
Editor@bcdisabilities.com |
CCD's snappy, same-day reply:
| Quote: | From: "ccd" <ccd>
To: <editor>
Sent: Thursday, January 29, 2004 1:54 PM
Subject: Justin Dart and Canadian Disability Stats
Hello from CCD,
The data I referenced is from the PALS (Participation Activity Limitation Survey), a post-2001 Canada census survey. They are just now starting to publish the PALS results. The lastest publication is just called Disability In Canada: A 2001 Profile. It was released December 3rd, 2003. The report was prepared by the Office for Disability Issues, Human Resources Development Canada. You can request a copy by phoning 1-800-788-8282 or contacting the enquiries centre at HRDCpub@hrdc-drhc.gc.ca. It is available in alternate media as well.
I have not seen any specific data on home care. Hope this is helpful.
Laurie Beachell
National Co-ordinator |
...We'll have a look at that publication and report our findings here.
| Quote: | | Note: We received the report some time ago from CCD. It does indeed provide an excellent breakdown of disability stats in Canada, including a first-rate explanation of the criteria used to determine the numbers. |
View shocking excerpts from leading texts.
Monitoring and regulating care givers:
We're concerned, however, not only with access to home support services but also with the quality of care and the ways in which these very personal services are monitored or regulated.
We were shocked to hear the recordings Nov. 24/03 obtained by CBC Radio-Canada of exchanges between a severely disabled woman and her care givers at St. Charles-Borromee Hospital in Montreal, Que., in which the woman is repeatedly denied requests for water and told to shut up and keep quiet or be left in bed all day. Read the full story, Threats spark hospital investigation, by Mike Woloschuk.
Tapes made secretly by the woman's sister after repeated requests for investigation revealed two male workers cruelly teasing the patient, telling her someone outside the window was watching her and masturbating.
Two workers were reportedly suspended after administrators reviewed the tapes, but another worker continued to put the woman to bed even after the family demanded the worker be kept away from her. The woman is now at another institution.
After hearing the tapes, the Quebec government launched an inquiry into hospital practices. See related stories Couillard incensed over abuse case, Director's death won't sidetrack inquiry, and Province takes over troubled hospital.
Here, too, is the e-mail we just sent to the story's author for updates:
| Quote: | From: <editor>
To: <mike_woloschuk>
Cc: <editor>
Sent: Thursday, January 29, 2004 10:25 AM
Subject: Investigation at St. Charles-Borrome
Hello Mike,
We're a disability consumer/advocacy website at http://www.bcdisabilities.com from Vancouver, B.C. and we're working on a piece about home care and attendant services at our Disability Protocols forum. We've included a link to your story about the institutionalized woman whose sister taped various accounts of abuse by care givers. What's happening with that inquiry? Have any charges or writs been filed?
Editor@bcdisabilities.com |
Care givers and women with disabilities:
We were similarly appalled by the EnableLink article, Safeguarding Your Self: Women-Centred Agencies Learning to Support Women with Disabilities, by Laura Kovacic of the London Battered Women's Advocacy Centre. According to the article:
| Quote: | | Startling as it is to learn that one in four women is abused, the statistics specifically involving women with disabilities are more horrific. DAWN (DisAbled Women's Network) estimates that women with disabilities are twice as likely as non-disabled women to be sexually assaulted. |
Further Reading:
For related horror stories, go to EnableLink here under Women with Disabilities Violence Prevention Resource Guide, and DAWN Canada. See also Education Wife Assault publications, especially Tips for Women's Service Providers Working with Women with Disabilities, a very complete 27-page report published Sept. 20/01.
Care givers and children with disabilities:
We also despaired at the summary conclusions from international reports on the prevalence of sexual abuse among children with disabilities by researcher Marit Hoem Kvam for Save the Children. Here's an excerpt from the preface of those findings available online at the Child Centre for Children at Risk in the Baltic Sea Region:
| Quote: | | Many children have their childhood ruined by adults who abuse them sexually. The researcher Marit Hoem Kvam has carried out four studies commissioned by concerning sexual abuse of disabled children. The studies show that disabled children are more often subjected to sexual abuse and that they are more vulnerable than other children. The reasons are complex. One reason is that these children often have several carers, which increases their vulnerability, and that they might have difficulties communicating that any abuse has taken place. (emphasis ours) The children have low credibility, and behavioural changes caused by the abuse are treated as if they were related to the disability. |
Service standards:
There has been some lively and informative discussion this summer concerning the regulation of care givers at our Yahoo disability chat room. Click here to join, then search the Archives for Sandra Carpenter's comments of Aug. 3/04. For more information about Ontario's Advocacy Act, 1992, repealed in 1996, which is referenced in that discussion, see the statute along with a snippet of debate about it and the new advocacy commission it was to
create in the Legislative Assembly of Ontario here
Our e-mail to the March of Dimes:
We've asked the Ontario March of Dimes about educational requirements, standards for attendant care, what makes a stand-out care giver and so on. Here's the e-mail we sent them this week:
| Quote: | From: <editor>
To: <provincialoffice>
Cc: <editor>
Sent: Wednesday, January 28, 2004 9:02 AM
Subject: Independent Living Centres
Hello March of Dimes Ontario,
We're a new disability consumer/advocacy website from Vancouver, B.C. at http://www.bcdisabilities.com and we were overjoyed to read Derek Watters' article on attendants and how to instruct them in the spring, 2002 issue of Abilities magazine recently. (There is a message at the end of the text to contact Paula Frost with feedback on the article but the e-mail address bounced). We'd love to get more similar narratives. We're currently at work a compilation of material concerning home care and attendants with a view toward legislative reform here in B.C. and beyond. You can read what we've got so far at our Disability Protocols forum here. Derek sent us an e-mail recently explaining that you're the experts in employing these workers. What can you tell us about attendants and their skills? Are they regulated, etc.? What makes a stand-out attendant?
We would also like to learn more about independent living centres, waiting lists, if any, cost, who qualifies, etc. Supported living arrangements seem to us to be the wave of the future, yet all we seem to be able to build out here are leaky condos and co-ops. (Read about leaky condos in B.C., New Zealand and Australia and the U.S. at http://www.bccondos.ca). Oh, please tell us there are no independent living centres implicated in that debacle. Would it be possible for us to visit a centre here in Vancouver? We strongly suggest that you provide an online tour of one or two at your website. If you do, we'll give you a link.
Thanks for your kind attention. We look forward to hearing from
you.
Editor@bcdisabilities.com |
Our e-mail from advocate Derek Watters:
We contacted the Ontario group first because they run attendant care services at Villa Verdi in Hamilton, home to our new disability acitivist pal, Derek Watters, an anthropology, psychology and education scholar and secular humanist who also suffers from arthritis. Here is the e-mail we received recently from Derek:
| Quote: | From: Derek Watters
To: editor@bcdisabilities.com
Sent: Friday, January 09, 2004 11:23 AM
Subject: Personal Attendants
Sorry for the delay in responding to you, but I've been trying to cope with a very painful, stiff & swollen elbow for the past couple of months. My rheumatoid arthritis, which has been in remission for years, is now disintegrating my elbow. I'm still waiting for a date to undergo joint replacement surgury.
Congratulations on starting a much-needed organization & website to politicize disability issues and people with disabilities. (I love "the "Left Coast"!)
Re: my article - Thanks for your kind words. However, in my supportive living unit, the Ontario March of Dimes hires the attendants who perform my care; I'm not involved in that aspect. My article was intended to cover interpersonal communication between client & attendant. I hope it did not mislead you.
Good luck in your future endeavours!
Derek |
Directing care givers the Watters way:
Abilities
Magazine Subscription
Taking Responsibility in Attendant Services,
What "Directing My Own Care" Means to Me
By Derek Watters
Spring, 2002
.. Not misled but struck rather by the intimacy clients and attendants must negotiate in their unique human relationship. Here are a few revealing glimpses:
| Quote: | When a new attendant arrives to assist me, I try to greet her or him in a relaxed, friendly manner. When I see that she or he has relaxed a little, I give the following genreal directions about my routine: Please listen carefully to my words. I will tell you everything you need to know. If you're not sure of what I said, please stop me and ask. I do not want you to guess my routine or assume that you know it. I would much prefer you to ask me a question. I do not expect you to read my mind. I don't expect you to memorize my routine. That's my job. You assist me by acting as my arms and legs. I do not need you to act as my brain; I still detect some life in it. Finally, I give a quick summary of the major tasks we'll perform during that routine.
With new attendants, the skill that I most need to improve is that of demonstrating patience. I need to remember that it takes time to communicate and to learn the details of any routine. In some cases, I will reduce the number of tasks in my routine so that we will be able to finish within my time allotment.
Over 15 years, I've likely interacted with 100 or more attendants. I have learned that if I want to be treated with respect, then I must treat them the same way...it's very important to know where to draw the line. I try to keep the relationship on a friendly, professional level. I avoid intimate revelations or questions. I do not expect my attendant to be my close friend, with whom I can exchange intimate thoughts. That is not her or his role. (-- p. 43) |
Further Reading:
More advice on directing care givers:
We are also very impressed with the advice column, Attendant Forum, at the excellent NewMobility.com, moderated by June Price, author of Avoiding Attendants from Hell, A Practical Guide to Finding, Hiring & Keeping Personal Care Attendants, the result of 35 years of disability advocacy and more than 50 years with spinal muscular atrophy. Read her fascinating biography here.
Sadly, the author died in January, 2002, but her columns remain relevant and continued to be published until March of that year. Here's a sample from that issue:
| Quote: | Q: I have been dating a man for several months. I just got a new female attendant, and I sense that there is sexual tension between the two of them. She is a great attendant, and they are hard for me to find, but I am not comfortable with the charge between her and my boyfriend. They are not actively flirting now, but I could see it escalating. What should I do?
A: This is really no different than if your boyfriend's new secretary is an absolute knock-out to whom your man seemed attracted. What CAN you do? You're not going to insist he fire his secretary anymore than you should fire your attendant because the two are exchanging sparks.
The only thing you can do is to initiate open and honest communication with each separately. Approach your attendant by saying, "You seem to be attracted to my boyfriend. I'm not comfortable with that. What do you have to say about this?" Maybe she will surprise you by apologizing, saying she already has a boyfriend, and promising to never let this happen again. Then again, she may tell you she's quitting you immediately and plans to run off to Acapulco with your man at midnight.
The point is, there's not a helluva lot you can do about the situation if they are going to hitch up, but you won't know anything for sure unless you broach the topics with each of them separately. Threatening is seldom effective, but open communication can be. TRUST is, of course, key--especially with your boyfriend. By talking about your fears and feelings, you may gain his commitment and trust. But the attendant has only a job to lose but a boyfriend to gain, so she is the one you have the least "control" over (if either).
Talk to them--letting each know that you know what's going on--and then, as much as possible, limit the time you three are together. Other than that, you can do nothing. If you fire her, the two might still get together, leading you to still breaking up with your boyfriend and also not having her! Leaving your boyfriend first (if the two begin to spark TOO much) might lead to him dating her anyway, in which case you might end up with her as your attendant, but you might then have to listen to her talking about what a great guy he is!
The bottom line is that there's simply not a whole lot you can do here. Que sera, sera. |
We will continue following developments in the home care agenda. Please check back soon for updates or submit comments to editor@bcdisabilities.com. We'd love to hear from you.
Link to this entry
http://www.bcdisabilities.com/bcdisforum/viewtopic.php?p=147#147
Last edited by editor on Tue Dec 02, 2008 5:22 pm; edited 15 times in total |
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editor
Site Admin
Joined: 31 Oct 2003
Posts: 297
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| Posted: Mon Sep 06, 2004 4:55 pm Post subject: |
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Monitoring care givers cont'd
Violence in the Lives of People with Disabilities
The End of Silent Acceptance
Hardcover
By Dick Sobsey
Monitoring care givers appears to be of particular concern in institutional settings. We were devastated to read the preface of Dick Sobsey's Violence and Abuse in the Lives of People with Disabilities, The End of Silent Acceptance?, published in 1994 by Paul H. Brookes Publishing Co., a book that was very kindly recommended by our excellent Yahoo disability chat room. Here is an excerpt from p. xix which we found particularly moving for the simple candor the author uses to convey his frustration as a long-time care giver himself:
| Quote: | | Having worked in human services since the 1960s, I have personally witnessed hundreds of examples of abuse and heard secondhand and thirdhand accounts of a great many others. I have also seen and sometimes been a part of many well-intentioned attempts to eliminate the abuse of individuals with disabilities, and most of these efforts have made significant differences. However, sometimes the efforts to eliminate abuse left the victims in a worse situation than before. Such failures have left me skeptical about finding any easy solution to the problem. |
We admire this book enormously both for its global perspective and for its searing, immediate use of actual accounts of abuse, a must-read for anyone involved in home care legislation.
Our e-mail from Prof. Sobsey:
Here is the e-mail we received from the author after our request for permission to post a number of passages in the book, which is regrettably out of print now:
| Quote: | From: "dsobsey" <dsobsey>
To: <editor>
Sent: Tuesday, August 17, 2004 3:49 PM
Subject: Permission to quote
Hi... Thanks for getting in touch. You are welcome to quote my material, but are you sure that you are asking about the right thing? If I remember rightly, Harm's way is published by the Roeher Institute and I am not even sure that there is any of my material in it.
ds |
| Quote: | | Note: You can see from the publications above how we might be confused but, in fact, Harm's Way (see below), published a year after Sobsey's, cites four of the professor's articles, studies and reports on this most troubling aspect of disability. |
Here are a few samples, then, though we warn you, they are not for the feint of heart.
Highlights from the author's own care-giving experience:
| Quote: | It would be impossible to describe the full range of offenses, but I will provide a few examples. Strongsuits are heavy denim coveralls that lace and tie in the back and have no openings at the end of the arms so that they restrict the use of hands and fingers. They were typically used as a form of restraint to prevent such behavior as pulling off bandages, but were often misused in other ways. On one occassion, as a punishment for yelling, a small boy was placed in a strongsuit and hung by the straps from a door hinge for about 45 minutes. On another occasion, a young man who was caught taking a shoelace out of a shoe was punished by having both arms held behind his back while his head was pushed into a wall. The resulting lacertation wrequired several stitches, but the incident report indicated that the injury occurred during a fall. The physician who sutured the laceration used no anesthetic, explaining that "severely retarded people are incapble of feeling pain."
Not all abuse occurred as punishment; sometimes it occurred as a perverse form of entertainment for the staff. One summer evening, the staff of two living units were given a cardboard box containing half a bushel of apples for "snacks" for the residents. It was a warm evening, and about 100 residents from both living units were herdced into a courtyard after supper. They courtyard was surrounded on three sides by the building, and three attendants stood at the open end facing the residents in the courtyard. The three attendants took turns taking apples out of the box and throwing them as hard as they could into the crowd of residents. Some throws missed completely, some only inflicted minor injury, but other hits did more severe damage. The attendants laughed and praised each other for particularly good shots while the residents tried to take cover and scrambled to retrieve and eat the broken pieces of fruit from the dirt.
Sometimes, especially when the abuse seemed particularly violent, I attempted to intervene directly - usually by telling people to stop, occasionally by physically coming between the victim and his abuser. These attempts had some immediate repercussions, but there was no lasting impact other than my being ostracized by my fellow workers. In a few instances, I received threats; usually these were gague or anonymous, rarely were they more direct. More frequently, I failed to intervene because I was afraid, uncertain, busy, tired, or simply overwhelmed by the extent of the problem. (-- pgs. 5-6) |
True accounts of infamous abusers:
| Quote: | As a psychiatric nurse, Michael worked in psychiatric settings and residential schools. When the Third Reich transformed these schools and hospitals into euthanasia centers, Michael willingly cooperated, and his hard work and success in the euthanasia program were rewarded by selection to the team that would set up and run the largert genocidal death camps in Poland. Michael's career path was not unique. Many other health, education and rehabilitation professionals who worked with people with developmental and mental disabilities during the Third Reich readily adapted to extermination of the clients (Sereny, 1974).
Gary believed that God had chosen him to look after people with disabilities. He befriended many and the church services that he held for his parishioners were well attended. Gary also absucted, imprisoned, raped, tortured, and murdered women. He kept his van parked on the street outside a large institution so that he could pull in women with disabilities to sexually assault them. When the church services were being conducted in Gary's living room, some of his prisoners were chained in the basement below. (Englade, 1988)
Judy felt her son's disabilities made him a burden. Although his limitations were not severe, she kept him away from home in a series of residential schools. When he reached adulthood, she bought $100,000 worth of life insurance on him before feeding him a lethal dose of arsenic. Somehow he survived, but his arms and legs were paralyzed by the poison that made him seem even more of a burden to his mother. Paralyzed and wearing 60 pounds of metal arm and leg orthoses, Michael Buenoano was taken for a ride in a canoe by his mother and brother who dropped him into a Florida river. The death was never considered suspicious and was not investigated until after Judy had attempted several other murders. (Anderson & McGhee, 1991)
Al was known as the Boston Strangler. His two-year-old daughter had an orthopedic disability, and Al felt that his wife gave the child all her attention while ignoring his needs. Al liked to remove the orthosis from his daughter's legs and massage her upper thighs so hard that she would cry intensely. Then he would put the orthosis back on and tie it with a neat little bow. He would tie that same neat little bow around the necks of the women he strangled and prop their lifeless legs into the same position that the orthosis held his daughter's legs in. (Blashfield, 1990) (-- pgs. 3-4) |
In-home care safest: Suggestions to lawmakers:
After such a difficult, emotional read, we were cheered enormously by Part II of the book, Preventing Abuse, which provides inter alia ample advice to legislators everywhere on how to strengthen laws to protect the handicapped and create safer environments.
| Quote: | Abuse prevention programs must consider caregivers. While caregivers are often among those who abuse people with disabilities, they can also provide the best known protection against abuse. Risk reduction can be achieved by ensuring that people with disabilities who require care receive it from those who are most likely to protect them, not abuse them. Risk reduction can also be achieved by providing support networks for families and other caregivers that will encourage the best possible relationships between them and the individuals in their care.
In-home care with natural families is typically the safest living alternative. (emphasis ours). In-home care can be made even safer through training and support programs. When children and vulnerable adults require care from nonfamilial caregivers, those caregivers must be carefully screened. Supervision, support and training for paid and volunteer caregivers are also important components of risk reduction. These strategies are discussed in Chapter 9. (From the conclusion of Chapter 8, Families and Other Caregivers, p. 240) |
Equally compelling is the conclusion of Chapter 9 at p. 266:
| Quote: | | This chapter suggests some strategies for developing safer human services environments for people with disabilities. The first and simplest strategy is to work toward the inclusion of all people with disabilities in the mainstream of society, thereby eliminating (or at least limiting) the need for specialized service environments that are associated with increased risks. (emphasis added). A second strategy must also be employed. Because many people with disabilities continue to be served in artificial human services environments (e.g., group homes, institutions), these environments must be made more natural and less institutional. This can be achieved through the development and implementation of sound organization and planning; efficient and thoughtful policies and procedures; careful recruitment; screening, and training; support programs and supervisory leadership |
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We are still reviewing the fascinating chapter on law and law enforcement, which discusses various rules of evidence as well as several disturbing judgments from Canadian and U.S. courts. We'll have a look at these more closely at our Disability Law FAQs forum. Please check there for updates.
Link to this entry
http://www.bcdisabilities.com/bcdisforum/viewtopic.php?p=220#220
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editor
Site Admin
Joined: 31 Oct 2003
Posts: 297
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| Posted: Sat Sep 18, 2004 3:51 pm Post subject: |
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Harm's Way
The Many Faces of Violence and Abuse against Persons with Disabilities
Paperback
By Roeher Institute
Our e-mail to Roeher:
Here is the e-mail we sent recently - just before the announcement of the grant from Sweden to Disability Rights Promotion International (DRPI). View the press release at Worldwide Disabilities.
| Quote: | From: editor@bcdisabilities.com
To: info@roeher.ca
Cc: editor@bcdisabilities.com
Sent: Tuesday, August 17, 2004 1:04 PM
Subject: Legislative analysis and recommendations for reform
Hello Roeher Institute,
We're a disability consumer/advocacy website at http://www.bcdisabilities.com and we were delighted to find your site today and the many low-cost (and we mean LOW cost, as in authoritative $12-books). We're particularly interested in the recommedations for reforms listed in Harm's Way: The Many Faces of Violence and Abuse against Persons with Disabilities. Unfortunately, many of the statutes and advocacy groups listed in that text are no longer operative. Does this work represent the most current example of the Institute's research in the area of legislative and administrative reform at a variety of jurisdictions?
We're very interested in comparing disability schemes throughout the world, particularly in countries with strong socialist traditions, such as Norway, Sweden and Finland. Any studies, reports, texts you could recommend would be greatly appreciated.
We would also like to know your views on the Supports Intensity Scale, which we discovered today. We are very much in favor of streamlined approaches to supports so that the disabled person does not have to fight the same fight endlessly for supports that allow her or him a reasonable quality of life. Are there other mechanisms like this scale and, if so, what do you think of them?
We'll certainly mine your site more fully now that we've found it and hope you'll do the same. We'd like to provide links to your work at the approrpiate places at our site and quote passages with full attribution, of course. Is that OK? Please feel free to post at any of our fora (forums?).
It was great finding you. Thanks in advance for your kind attention.
Editor@bcdisabilities.com
http://www.bcdisabilities.com |
We await a reply, which we'll post here when it arrives. Please check back soon for updates.
Link to this entry
http://www.bcdisabilities.com/bcdisforum/viewtopic.php?p=230#230
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editor
Site Admin
Joined: 31 Oct 2003
Posts: 297
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| Posted: Wed Sep 29, 2004 3:08 pm Post subject: |
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Our e-mail to the B.C. Coalition for Persons With Disabilities (BCCPD):
| Quote: | From: editor@bcdisabilities.com
To: trans@bccpd.bc.ca
Cc: editor@bcdisabilities.com
Sent: Monday, August 09, 2004 11:17 AM
Subject: The Home Care issue of Transition
Hello Transition Editor,
We were delighted to see the latest excellent issue of your magazine devoted to home care. In fact, we like it so much we'd like to kick to it on our homepage at http://www.bcdisabilities.com. Please let us know when you have a clickable photo and story at Transition online. And that's as subtle as we can be about that.
In the meantime, see our extravagant and well-deserved review of your publication as well as the many places we mention the good work of the coalition. What we particularly like about the current issue is the focus on narrative with real people.
We would be very interested to know the coalition's views on the regulation of home care and home care workers. We're currently examining Ontario's Advocacy Act, which dealt with this aspect of the service but which was mysteriously scrapped in 1992 for no good reason we've been able to discern. Like the coalition, we dislike the endless repetition of research that arrives invariably at the same conclusions, so we'll post the statute and what stakeholders had to say about it under Home Care here.
Since we're essentially on the same team, please let us know if there is anything we can do to propel the coalition's home care initiative toward legislation.
We would also like to know how everyone at our Disability Heroes forum from Jumping Through Hoops is doing today. Will there be a follow-up, do you think?
Regards,
Editor@bcdisabilities.com |
Link to this entry
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editor
Site Admin
Joined: 31 Oct 2003
Posts: 297
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| Posted: Wed Sep 29, 2004 3:11 pm Post subject: |
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The coalition replies:
| Quote: | From: IF Project
To: Editor
Sent: Monday, August 16, 2004 3:55 PM
Subject: Response to your email on the Homecare Edition of Transition
Hello BC Disabilities Editor,
Your e-mail of August 9, 2004 has been passed on to me to provide you with some background information on your query about the Coalition's position on the regulation of home care and home care workers.
Several years ago the Coalition attempted to convince the government of the day (an NDP government) that British Columbia's Continuing Care Act should be amended to include a Bill of Rights for consumers. New Zealand had introduced this kind of legislation in an effort to protect consumers and to ensure quality of service. The government refused to do so, being concerned I believe about building any rights entitlement into law. The Advocacy Act in Ontario to which you referred in your e-mail allowed for advocates to be involved in issues related to decision-making around health care issues but it was repealed after the Harris government came to power in Ontario on the grounds that it was too expensive to implement.
The Coalition would like to see more rights protection built into legislation around home support and home care. Perhaps the upcoming provincial election may provide another opportunity to advocate for this.
Please let me know if I can answer any other questions.
Christine Gordon
BC Coalition of People with Disabilities
204-456 West Broadway
Vancouver, BC V5Y 1R3
T: 604-875-0188
F: 604-875-9227
E: ifproject@bccpd.bc.ca |
Link to this entry
http://www.bcdisabilities.com/bcdisforum/viewtopic.php?p=239#239
Last edited by editor on Fri Apr 04, 2008 3:39 pm; edited 2 times in total |
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editor
Site Admin
Joined: 31 Oct 2003
Posts: 297
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| Posted: Wed Sep 29, 2004 3:20 pm Post subject: |
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More questions from us:
| Quote: | From: editor@bcdisabilities.com
To: IF Project
Cc: editor@bcdisabilities.com
Sent: Wednesday, September 29, 2004 2:11 PM
Subject: Response to your e-mail on the Homecare Edition of Transition
Hello Christine,
We've been spreading the word about the coalition's home care initiative and also adding some pretty harsh passages from Richard Sobsey's book about abuse within (and without) institutions. One problem we're having, however, is the constitutional issue regarding which order of govt - provincial or federal - is responsible for the provision of health services. Has your legal team advised you in this regard? In addition to the judgment in Auton (see trial and appeal court decisions here and here at the Courts of British Columbia website), we have some material from two eastern law professors on interpreting the Canada Health Act so as to confer positive benefits, which would be especially applicable to members of a class protected by the constitution, in our view.
How is the project coming? Please keep us posted on any developments.
Thanks,
Editor@bcdisabilities.com
Tracking disability worldwide
P.S. Kudos to coalition advocate Tom McGregor for his comments on CBC Radio I this a.m. regarding a proposed transit fee increase and the not-so-HandyDART service. We hope we'll see his comments on your website or in Transition magazine along with a lot more stories about real people with disabilities and any problems they're having with accessibility. Because the current disability tribunal decisions are not a matter of public record (contrary to the rule of law), the public has no way of assessing how the current scheme is working. We are pursuing this aggressively with the ministry. You can see our string of e-mails at Disability Law FAQs. On it goes.
ed. |
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Last edited by editor on Fri Apr 04, 2008 3:40 pm; edited 4 times in total |
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Guest
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| Posted: Thu Sep 30, 2004 10:12 am Post subject: |
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The coalition replies:
| Quote: | From: IF Project
To: editor@bcdisabilities.com
Sent: Wednesday, September 29, 2004 5:02 PM
Subject: Response to your email on the Homecare Edition of Transition
Hi Editor,
I think that the Constitution is clear that the provincial governments have responsiblity for the provision of health care. The federal government's role is the one that is always seeking definition and one that seems to rest on both the carrot of cost-sharing and the stick of the penalties that can be levied through the Canada Health Act.
Thanks for your kind words about Tom's radio interview. We heard this afternoon that TransLink's request for a fare hike was turned down by the GVRD Board. So maybe it helped a bit.
Christine |
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http://www.bcdisabilities.com/bcdisforum/viewtopic.php?p=241#241 |
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Guest
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| Posted: Thu Sep 30, 2004 10:15 am Post subject: |
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Back to us:
| Quote: | From: editor@bcdisabilities.com
To: IF Project
Cc: editor@bcdisabilities.com
Sent: Thursday, September 30, 2004 10:07 AM
Subject: Response to your email on the Homecare Edition of Transition
So how would you advise individuals and advocacy groups to go about lobbying for statutory home care for those with disabilities - by contacting federal/provincial ministers, MPs, MLAs or all of the above? The coalition has considerable experience and expertise in this area. How should we fight and encourage our visitors to fight to get the biggest bang for our buck, so to speak?
Also, if you had the ear of a very senior, very influential official in the judiciary, say, or gov't, is there anything you'd like to ask regarding home care or disability issues generally?
Ed.
P.S. Yes, the TransLink victory was an unexpected win, but we're still interested in the difficulty users face accessing HandyDART. Limited accessibility is like limited equality and we have said so to TransLink. |
| Quote: | | Note: For more information about federal and provincial roles under the Constitution, click on The Chaoulli Case, a Supreme Court of Canada challenge this summer to decide whether Canada's national health care scheme should permit privatization, at the Candian Health Coalition website. |
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editor
Site Admin
Joined: 31 Oct 2003
Posts: 297
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| Posted: Thu Sep 30, 2004 12:37 pm Post subject: |
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Let's ask a constitutional law expert:
University of Ottawa law professor Martha Jackman (see bio and a recently-approved research project) acted as counsel for the Charter Committee on Poverty Issues and the Canadian Health Coalition in the Chaoulli case, which went before the Supreme Court of Canada this summer. (See materials above, especially Prof. Jackman's factum and article, Misdiagnosis or Cure? Charter Review of the Health Care System).
Our e-mail to Prof. Jackman:
| Quote: | From: editor@bcdisabilities.com
To: mjackman@uottawa.ca
Cc: editor@bcdisabilities.com
Sent: Thursday, September 30, 2004 11:31 AM
Subject: Chaoulli and Canada's international agmts
Hello Prof. Jackman,
We were just visiting the health coalition's website and the materials concerning Chaoulli. Very powerful. However, we noticed in your argument before the Supreme Court of Canada various references to international agmts to which Canada is a signatory, and this puzzles us. We had a visit from the Hon. Frank Iacobucci to a Charter class one morning awhile back and when we discussed the persuasiveness of these paper tigers, that was pretty much his response. How can the judiciary, he suggested, give effect to an international agmt Parliament has not seen fit to support with legislation? How do you respond to that?
Also, you have written quite extensively and persuasively, in our view, about the constitutional tension in Canada between the federal and provincial govts in regard to health care. We're working at the moment on an initiative toward the provision of home care for those with disabilities throughout Canada on the premise that independent living is a more cost-effective and generally more desirable goal than the alternative, institutions. Are there any readings you could recommend to help our visitors direct their campaign for home care as individuals and as social advocates?
Thanks, and kick some leaves for us in the Gatinueau hills this fall. Ottawa can keep its icy sidewalks and filthy canals and god save us from the self-important Glebe, but we long daily here on the left coast for the gentle formality of eastern manners and customs and people who dress for a performance at NAC.
Thanks,
Editor@bcdisabilities.com
http://www.bcdisabilities.com
Tracking disability worldwide. |
Link to this entry
http://www.bcdisabilities.com/bcdisforum/viewtopic.php?p=243#243
Last edited by editor on Fri Apr 04, 2008 3:44 pm; edited 3 times in total |
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| Posted: Fri Oct 01, 2004 5:34 pm Post subject: |
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Prof. Jackman's reply:
| Quote: | From: Martha Jackman
To: editor@bcdisabilities.com
Sent: Friday, October 01, 2004 11:39 AM
Subject: Chaoulli and Canada's international agmts
Not surprising, since Iacobucci was in dissent in the Baker case, where the SCC established that the Charter must be read in light of Canada's international human rights commitments. I think the CCPI factum on Baker is on its website - you might find it interesting... In terms of constitutional arguments in support of greater federal intervention in home care, I'm afraid nothing leaps to mind.
All the best,
Martha Jackman |
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Guest
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| Posted: Fri Oct 01, 2004 7:21 pm Post subject: |
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Our e-mail to PovNet:
| Quote: | From: editor@bcdisabilities.com
To: povnet@povnet.org
Cc: editor@bcdisabilities.com
Sent: Friday, October 01, 2004 5:59 PM
Subject: Baker links are dead
Hello PovNet,
We've just had a most instructive reply from Prof. Martha Jackman regarding the persuasiveness of international agreements in legal argument. She directed us to the Baker factum but the links at your excellent website re: Baker (see below) seem to be out of commission. Could you re-issue them or direct us to them elsewhere? We're making quite a bit of noise about home care at the moment and trying to marshal some expert opinion so as to get the biggest bang for our home care campaign buck.
Thanks very much,
Editor@bcdisabilities.com
http://www.bcdisabilities.com
Tracking disability worldwide.
Enclosure:
| Quote: | The Supreme Court of Canada ruled on July 9, 2000 in Mavis Baker v. Minister of Citizenship and Immigration that administrative decisions made on the basis of prejudice against single mothers, domestic workers, people with psychiatric disabilities or others stereotyped as being more likely to be dependent on social assistance will be overturned as "unreasonable" by the courts.
The Court found that administrative decision-makers must act in accordance with values articulated in international human rights treaties that Canada has ratified. The Charter Committee on Poverty Issues (one of the intervenors in the case) issued a press release applauding the decision. |
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editor
Site Admin
Joined: 31 Oct 2003
Posts: 297
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| Posted: Mon Jun 05, 2006 3:25 pm Post subject: |
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View summary: FROM SUPPORT TO ISOLATION, THE HIGH COST OF BC’S DECLINING HOME SUPPORT SERVICES a report dated June 5/06 by Marcy Cohen, Arlene McLaren, Zena Sharman, Stuart Murray, Merrilee Hughes, and Aleck Ostry of the excellent Canadian Centre for Policy Alternatives.
Here is a key excerpt:
| Quote: | Recommendations for the Provincial Government
• Increase funding for home support to ensure that individuals who require only prevention and maintenance supports (i.e. meal preparation, cleaning, shopping, etc.) to remain in their own homes receive the services they require, and that these services are part of the care provided to all home support clients.
• Increase integration of home support with other health services, including the provision of core funding to home support programs/agencies and better co-ordination with home care and other community health and primary care services.
• Improve working conditions for community health workers and provide more opportunities for CHWs to have input into care planning, and develop a mechanism to support continuing education.
• Prioritize research on innovative models for home support delivery (both local and international) that are comprehensive, prevention-oriented, and effective in controlling costs within the broader health system.
• Increase transparency and accountability in health care by requiring health authorities to report their continuing care expenditures by category. (Health authorities are currently not required to report this breakdown, making it impossible for the public to know how much is being spent on various services, such as residential care, home support, home care, etc.)
• Establish an independent external review of the full range of continuing care services, with the goal of developing a new plan and approach to the delivery of these services. |
We couldn't agree more. Ms. Cohen told CBC Radio One's Early Edition program June 5/06 that the country to follow on this is Denmark.
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editor
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Joined: 31 Oct 2003
Posts: 297
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| Posted: Fri Apr 04, 2008 3:49 pm Post subject: |
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Racking up best answers at Answers.com:
| Quote: | Home Care Business Daily Rate or Hourly?
Hi I am in the home health business for elderly and disabled people.Alot of people want 24 hour care for their loved ones however it gets really expensive! However I am seeing a trend in home care where home health agencies are trying to offer services cheaper to clients and charing a daily rate instead of an hourly rate and paying their employee's a daily rate. For instance charge a client $165 for 24 hour care and then pay the employee $65 or so. I have done home and 24 hour care before I did my business and I know how hard that home care can be and how much work is involved. Even if you count 8 hours of sleep time you are still getting paid about $4 an hour for 16 hours. My question is doing this fair and legal to workers? I also try to tell clients you are paying for the quality of care cause if anyone takes $50/day for 24 of work you will not receive top care. How is this legally ok I am in Michigan and do you think I should consider this method like a few agencies are doing?
3 months ago |
Best Answer - Chosen by Voters
| Quote: | What an excellent question and one many jurisdictions will be visiting soon as populations worldwide age and require home care services. One of the biggest problems with home care is the utter lack of regulation, which causes problems for clients and service providers. (More about this here. What's needed everywhere is a public authority able to address complaints. You would be well advised to join every state / municipal interest group on home and seniors care in your area to ensure your concerns receive proper review. Start a blog! Then use your advocacy network as a selling feature for your business. It shows you're interested in your industry and influential. It shows you're open to new ideas, looking always at ways of improving service. If you can describe effectively what constitutes good service in your industry and show how your business meets these goals, find a way to communicate it to prospective clients.
In the meantime, charge whatever the market will bear - period. Clients will vote with their feet. The low-cost provider may grab market share initially but quality service and reputation have a great deal of value in such a personal industry.
One issue of particular interest: Sadly, many of us seek to hire good people to perform personal services we either can't or don't wish to provide ourselves to our loved ones. A home care business with an excellent reporting service on gma's progress and changing needs therefore strikes me as a good contender.
3 months ago |
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editor
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Posts: 297
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| Posted: Tue Mar 24, 2009 2:26 pm Post subject: |
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From Nick's Crusade on the proposed U.S. Community Choice Ast, posted March 23/09:
| Quote: | .. Unless we have reliable access to proper personal attendants and supports in the community, unless we pass the Community Choice Act reintroduced in Congress THIS TUESDAY, the 24th) and offer REAL choices of community living vs. living in a hopeless institution’s back ward, then debating “disability as a social construct” will be the luxury of academics, while those with severe disabilities hope the nurse will let them turn on their side today. Until we have the help we need, our problems will be very real and physical, with the invisible cultural barriers several rungs up the ladder, something we HOPE we can confront once we climb up.
And once more and more of us with severe disabilities are living independently and publicly seen doing so, the appearances, and thus the societal perceptions, will shift, and the assumptions that we are helpless, can’t contribute and need to be in institutions will dissipate. We can begin to reverse that vicious cycle if both appearances and the realities of what we’re contributing change.
Now we have to get the needed services and supports to change the lives of people with disabilities. And that’s what the Community Choice Act is about. |
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